This report gives a brief summary of the textual analysis of the submissions to the survey on Endometriosis.

Summary of Key Points

  • A total of 6236 comments were posted over two questions.
  • Approximately GCSE-level educated participants.
  • Generally quite negative submissions with fear and sadness also being common sentiments.

Frequency Analysis

The diagnosis responses had an average of 120 words in each compared to 77 for support questions.

The most common adjectives, phrases and pairs of words for each question are displayed below.

Question 1: Diagnosed

Question 2: Support

A network of the most frequent consecutive word pairs (bigrams) is shown below.

Diagnosed

The main responses included themes of the different stages of endometriosis and the time it took to be diagnosed. Certain issues such as “ectopic pregnancy”, “brain fog”, and “blood loss” were raised, as well as issues to do with surgeries and the personal impact the diagnosis has on the person.

Support

A range of different word pairs appear in responses to question 2 including “didn’t understand” and “lost jobs”. However some seem more positive with “flexible hours”, and “reasonable adjustments”.

Topic Extraction

A plot of 10 words most associated with one of 3 topics are shown below. Each coloured bar chart represents a single topic.

A brief summary of those topics are:

Topic Number Common words (Q1) Common words (Q2)
Topic 1 isolation, resection, veins fix, painkiller
Topic 2 gyny, aches, heartache inclusive, therapist
Topic 3 micarrying, councellor mri, consent, independence

Diagnosis

Support

Following the link below will provide an alternative topic model visualisation which is split into two sections:

  • Left - showing topic distances from each other based on the types of words in each,

  • Right – showing the top 30 words pairs in each topic (red bar) and overall in the dataset (blue bar). I recommend setting the relevance metric to 0.6 to get a more representative list of words in each topic.

This visualisation is interactive, hover over each topic number to view the words in each topic, or select each word to view which topics it is relevant to.

https://nicolednisbett.github.io/EndoD/#topic=0&lambda=0.60&term=

Sentiment Analysis

The wordcloud below gives the most popular words associated with positive and negative sentiments in the survey. Specific comments which are associated with the most popular sentiments are listed below.

Sentiment Clouds

Diagnosed

Support

Sentiment Categories

The NRC sentiment lexicon uses categorical scale to measure 2 sentiments (positive and negative), and 8 emotions (anger, anticipation, disgust, trust, joy, sadness, fear, and suprise). Examples of words and comments in these sentiment categories are below.

Both questions were mainly negative, sadness and fear however the second question to do with support in the workplace was slightly more positive than the first question about diagnosis.

Hover over the plot below to read the content of the comments within each sentiment category. Longer comments may not show in their entirety.

Diagnosed

## [1] 7
## 
##        anger anticipation      disgust         fear          joy 
##   0.09110114   0.10412816   0.09277352   0.11988381   0.07622568 
##     negative     positive      sadness     surprise        trust 
##   0.12005985   0.11249010   0.11838747   0.05721327   0.10773699

An example of a comment categorised as negative

I have been diagnosed with suspected Endometriosis. I’ve experienced a constant weight: pressure from my reproductive system; hot flashes; cold sweats; shaking; stomach cramps; headache/migraines; nausea; vomiting; emphysema; increase sense of smell; loss of consciousness; constipation; cramps and even Temporary blindness.

An example of a comment categorised as sadness

Yes me, absolutely awful horrendous pain most of the time. Feeling sick from the pain. Bloating unable to go to the loo without crying in pain. The doctors not wanting to diagnose or refer me to they gynaecologist. Some days I’d be double up on the floor unable to move with the pain. Unable to walk far at times.

An example of a comment categorised as fear

Yes. It took me 13 years to get a diagnosis. I have tried treatments that have made my symptoms a lot worse, i have been told the pain is anxiety, i was told that my symptoms could not be caused by endometriosis because I dont have heavy bleeding. I had surgery in April and the disease is too far advance so im awaiting further surgery to treat it

Support

## [1] 7
## 
##        anger anticipation      disgust         fear          joy 
##   0.07559473   0.10505978   0.08610071   0.12269050   0.06291511 
##     negative     positive      sadness     surprise        trust 
##   0.12921145   0.12691704   0.12558870   0.05434126   0.11158073

An example of a comment categorised as negative

I myself have been diagnosed with endometriosis after 8 years of being told I had ibs, going through unnecessary tests, operations and being put on medication that not only was not needed but made my situation worse, being told the pain was all in my head and I was making it up leaving me feeling suicidal as no one would listen and kept dismissing me.

An example of a comment categorised as positive

I was diagnosed with Stage 4 endometriosis in 2015 and have had three surgeries since including a total hysterectomy. Endometriosis has a significant impact on my day to day life due the symptoms I experience including pain and severe fatigue. I am waiting for further surgery to remove endometriosis from my bowel.

An example of a comment categorised as sadness

I have endometriosis since the age of 11. I am now 47 and the experience of this disease is awful not only for my physical health but also of my mental health. I was told that there was nothing wrong with me, to it was all in my head or have a baby and that will sort it. To be told constantly to try for a baby when in fact you are infertile (this was found out in Germany who are 20 years ahead of us with endometriosis) is truly heartbreaking for both of you. My husband has had nearly 30 years of seeing me in tremendous pain and bleeding, rushed into hospital as crippled with pain/bleeding to be told it was appendicitis or PID. Missed large amounts of school, and had to be carried to the toilet by my parents. Until you personally experience this illness no-one can comprehend the distress this causes. I have now had extensive surgery to remove the endo and have the merina coil to keep it at bay but it meant I had to decide whether to have more children or quality of life, again no one fully understands the pain these decisions causes couples. It took 12 years to be diagnosed far too long in my opinion as by then the endometriosis has took a grip. I had nose bleeds starting my periods and had a fibroid growth in my ear.

Told constantly in my 20’s to have a hysterectomy but would you remove a diseased heart or penis to solve a problem.? Then why always look to remove the womb when this does not always resolve endometriosis. I am so far glad I did not resort to this.

In short my experience has been horrible and I hope no other young lady goes through this.